In preparation for presenting a breakout session about Fatigue, Sleep, and IBD at the upcoming Live Online Community Conference (LOCC), Nour and I (Maha) have shared our own personal experiences with and perspectives on IBD-related fatigue.

Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 

Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.

Be inspired by Fionna's #IgniteTalk 🔥

Mahalakshmi (Maha) Parakala is an active member of the Patient Advisory Council and currently serves a co-leader of their recruitment taskforce. She is a LOOP contributor, has presented during ICN Community Conferences, has co-developed IBD resources, and recently co-hosted an episode of the new imPACt podcast. At our Spring Live Online Community Conference, Maha shared her story about discovering patient advocacy and the role it has played in her life during our Engagement Plenary Better Together: Growing our CIRCLE Community to Take Care to the Next Level.

Please enjoy Maha's presentation, which we have shared both as a video and in transcript form, below:

On Thursday, March 25 and Friday, March 26, ImproveCareNow will host their third LIVE Online Community Conference (LOCC). Sessions begin on March 25 at 9:30 AM ET (8:30 AM CT, 7:30 AM MT, 6:30 AM PT) and continue through 5:00 PM ET when a causal Engagement and Social Hour begins. Sessions resume again on March 26 at 10:00 AM ET and continue through the first half of the day, with a wrap up scheduled at 1:20 PM ET. 

All are welcome to join us for this interactive, online event where we plan to all teach and all learn about topics including advocacy for patients, families, and the community; managing mental health and IBD during the COVID-19 pandemic; recovering from flares; and food insecurity.

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:

On Thursday, September 24 & Friday, September 25, ImproveCareNow will host their second LIVE Online Community Conference (LOCC). Sessions begin on September 24 at 12:30 PM ET (11:30 AM CT, 10:30 AM MT, 9:30 AM PT) and continue through 5:00 PM ET when a causal Engagement and Social Hour begins. Sessions resume again on September 25 at 10:30 AM ET and continue throughout the day, with a wrap up scheduled for 4:35 PM ET. 

All are welcome to join us for this interactive, online event where we plan to all teach and all learn about topics including diversity & equity, patient & family engagement, the effects of COVID-19 on health and care, and our path forward with new ICN leadership.

On Wednesday, May 27, 2020 ImproveCareNow announced the decision to transition their in-person Fall Community Conference to a Live Online event. The decision was made jointly by the ImproveCareNow Directors and the Community Conference Planning Team, in consideration of the continued uncertain circumstances of the COVID-19 pandemic. 

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk:

I was delighted to have time to join the ImproveCareNow Live Online Community Conference earlier this month, about 1.5 years after leaving my role as Improvement Director. What a delight to watch this group of improvers rise to the occasion as never before, bringing hundreds of people across the globe together under challenging circumstances, all while understandably mourning the ability to be together in person as planned.